There once was a chore that I hated to do
Being sent to the kitchen always brought on the blues
But now with RA
And hand pain array
I love plunging my hands into hot dishwashing stew
No, I don’t mean the candy bar. Though I haven’t had one in about a thousand years (Ok, I exaggerate), I can still savor the crumbly, peanut-buttery taste that slowly dissolves in your mouth. Unless you crunch down and chew it away quickly. And who wants that?
I refer to actual fingers. Mine, to be exact. And I suppose those of many others who deal with some form of arthritis. In my case, both osteoarthritis and rheumatoid arthritis.
OA comes from wear and tear. And after thirty years of mostly bedside nursing, raising children, and keeping house my hands are worn and torn. Not visually, mind you. Visually, they’ve held up pretty well.
But inside, oh, inside they hide the impact of their hard work.
Now RA comes uninvited. Unbidden, as I referred to it in one of my poems. I’m not sure when mine came knocking, but it was formally introduced to me in 2004. Ten years this relationship has lasted. Ten official years of living together.
The first thing I noticed, the first physical thing, other than a generalized malaise and lethargy, was the declining agility and flexibility of my hands. They seemed to be stuffed with cotton. Or stuffed in several layers of mittens. Mittens, not gloves.
Suddenly, the people behind me at the grocery check-out line had to wait patiently while my clumsy fingers dug out small coins from my wallet. Even the bills seemed to be stuck together in a way they’d never been before. I’d always paid cash with the correct change for my groceries. Something my father taught me, I suppose.
No one said anything, but I could feel the eyes on me as they waited. And waited. I began to feel self-conscious about it and that made the going even slower. My heart beat at a higher rate as my turn approached to lay my things on the conveyor belt.
It’s silly, isn’t it? To worry about being able to dig money out of your wallet fast enough. But that wasn’t the only thing my seemingly thickened, somewhat petrified fingers affected.
The sewing needle seemed to have disappeared. It’s girth reduced to nothingness. I could see it, but picking it up and holding it was another matter. It was a minute, slippery, slithery snake that I could barely control.
Along came steroids (Prednisone), and with that a new day dawned. Or maybe an old day, when I had full control of my fingers, when they were dexterous once again. And, painless.
I have had many years on steroids, and many years off steroids. Off is better. Better for your overall health. On is better for your fluidity of movement. Though it is an artificial suppleness.
Currently, I’m off. And plan to stay that way. At least, 90% of the time. With RA you learn there is a lot of give and take. And if you don’t give, it will take.
I have come to accept that I will henceforth live with a terminal case of butterfingers. At this point, a slight degree of painless butterfingers. One that does not stop me from doing anything I want to do. From writing to typing, from cooking to hand sewing, from housecleaning to holding an actual book in my hands. From caressing the lovely little faces of my granddaughters to whipping out the credit card to buy them things.
And speaking of the art of buying, we’re going shopping today. I think I will pick me up a bit of that crumbly, peanut-buttery escape.
When I arrived to care for my toddler granddaughter a month ago, I was presented with this bucket. It bears a butterfly made with her footprints. “I will put it in my office,” I said, immediately wondering what kind of plant I could put in it once I returned home.
Meantime, I placed it on the dresser in my room, and it occurred to me that it was the perfect place to hold my pill bottles. Up and away from curious little fingers.
I’ve reached a point in my life where I don’t have to worry about where I place my pills. Though they each have a certain “home” in my house, it mattered not where they went. Now, I have to be conscious about the whereabouts of my concoctions.
What’s in the bucket? Prednisone, my frenemy, 2.5 mg once a day. I’d weaned off, but after a week my hands were hurting so bad I had to cave and go back on it for the duration. When I was young and raising my children, I had no idea the workout my hands took. Now every twinge reminds me that caring for a toddler is manual labor. Though with great and bountiful rewards.
There are days where my hands still hurt, like today, and my wrists as well. Foreseeing that, I packed a wrist brace, which I’ve had to use several times. I wear it at night and in the morning the pain is gone or diminished. Perhaps it’s mind over matter, a placebo effect, but I’m not questioning its efficacy.
Also in the bucket is Folic Acid, the rescue drug for Methotrexate. Nuff said. I take MTX on Wednesdays so it doesn’t rate a place inside the bucket.
There’s my eye vitamins, prescribed by my ophthalmologist. They contain Vitamin C, Vitamin E, Zinc Oxide, Copper, Lutein and Zeaxanthin. I’m supposed to take them twice a day, but usually take it once. They are mostly prophylactic. My “apple” a day, you might say. Or maybe, the apple of my eye.
There’s Vitamins B1, B6 and B12, prescribed by my PCP to treat shingles pain. It is now almost 14 months since I had shingles, but the pain is not completely gone. On a scale of 1 to 10, it is a one, sometimes a two. It depends on how that part of me is affected by my activities. But it took its sweet time climbing down that ladder. I was
scared to death worried it would be a 10+ forever.
Also in the bucket is acetaminophen (the ingredient in Tylenol). Since Naproxen and/or Plaquenil gave me tinnitus I have to stay off NSAIDS (non-steroidal anti-inflammatory drugs). So, hello, acetaminophen, which I take once or twice a day. Some days none at all. The good days. The tinnitus is practically gone. I only hear it when I concentrate on it. And I don’t have much time to concentrate on it right now.
And of course, Vitamin D3 and calcium supplements, which also contain D3. I’ve been on Vitamin D since 2006 and I give it much credit for my turnaround that began in 2009. I know it was a mix of things that allowed me to rise to the surface and breathe again, but Vitamin D was a major factor. I take 2000 IU’s a day. Each calcium tab gives me another 500 IU’s, so I end up with 3000 on most days.
In a large Baggie in my unmentionable’s drawer are:
Gabapentin, in case of more severe shingles nerve pain,
Naproxen, if bursitis rears its ugly head again, I will have no choice but to bite the bullet,
the Fosamax, which I’ve yet to start. I know, I’m bad,
and most important of all, cyclobenzaprine (generic for Flexeril, a muscle relaxer). My rheumy prescribes it for sleep. And we know if we don’t sleep, our pain is that much worse. I take 5 mg nightly and when it’s been a painful day I take ten.
No longer in the bucket, its empty husk having joined the inhabitants of Baggie World, is Acyclovir, the antiviral my rheumatologist ordered for a year to prevent a shingles recurrence, Lord forbid. I ran out a few days ago, but I’ve crossed the year mark and now I cross my fingers. We shall see what, if anything, develops.